All of us face the difficult prospect of a parent or loved one suffering from an illness that ultimately leads to death. When that time comes, we will want to ease their physical and emotional pain, respect their wishes, and allow them to die with dignity — the same things we will want for ourselves.
The way that Americans die has changed but, unfortunately, our medical system hasn’t kept up. It was designed at a time when death was often sudden or declines in health were relatively rapid. These days it is much more common for people to live longer with multiple chronic conditions, and we have the technology to prolong life as death approaches. End-of-life care is fragmented, intensive, and costly — and patients’ wishes are often lost due to poor communication.
As baby boomers continue to age, swelling the ranks of the elderly and those near death, how seriously ill people approaching the end of life are cared for must be reformed. We had the honor of chairing the Aspen Health Strategy Group, composed of 23 experienced leaders in health care, technology, and the media, as it explored ways to improve care at the end of life. Here are five of the transformative ideas we included in the group’s report, “Improving Care at the End of Life.”
Emphasize planning for the inevitable. Creating an advance directive and speaking to loved ones about end-of-life care wishes should be as natural and commonplace as financial planning. Far too many care decisions are made by family members who are only guessing at the wishes of their loved ones. It’s awkward to talk about death and dying, but necessary. By integrating advanced care planning into things we already do in our daily lives like using smartphones or making employee benefit decisions, we can encourage these much-needed conversations.
Refine Medicare coverage. Two serious gaps in health insurance coverage threaten many people facing the end of life. Medicare does not provide coverage for social supports, like breaks for family caregivers, or for the coordination of care. Medicare policy should be changed to include benefits for those diagnosed with advanced illness that provide social supports and care coordination through a defined care team. This kind of coverage would encourage team-based organizations to meet the needs of patients. Medicare should test the integration of its hospice benefit into Medicare Advantage and other demonstrations. Improving efficiency and delivery will help those who are seriously ill get the care they need — and help their caregivers deliver it — without jumping through hurdles and battling a bureaucracy not designed with their circumstances in mind.
Measure the effectiveness of end-of-life care. Only by understanding how well health care and social services support individuals at the ends of their lives can we understand, demand, and reward good performance by their caregivers. So we need to develop metrics that can provide accountability and transparency. In addition to measuring the quality of care, these metrics must also measure patient preferences and families’ experience as they care for their loved ones.
Train more clinicians in palliative care. Graduate medical education includes little training on the needs of patients in the last years or days of their lives. We need to create financial and professional incentives to expand the number of doctors, nurses, nurse practitioners, social workers, and other health care professionals who have the right training to effectively and compassionately provide end-of-life care.
Get community input on better models of care. Addressing this urgent need will create disruptions in how health care is delivered. Leadership by policymakers and private sector leaders is required to improve end-of-life care, but so is a social consensus that such a change is needed. This can happen only at the local level. Some communities will rise to this challenge. Those that do so successfully should be held up as examples and the lessons they learn shared with others seeking to achieve the same ends.
We sincerely hope that health care policy leaders will take this problem head-on. Much more can be done to make sure that all Americans die according to their wishes and with dignity. By implementing the ideas outlined above, we can make important strides to that end.
Kathleen G. Sebelius was the secretary of Health and Human Services from 2009 to 2014. Tommy G. Thompson was the secretary of Health and Human Services from 2001 to 2005. They are co-chairs of the Aspen Health Strategy Group.